The Pain Drain

One thing about this whole cancer adventure is that I can’t really know what to expect on any given day.

It’s a huge mystery, and it seems that there are as ways a cancer journey can unfold as there are folks who’ve had cancer.

I had THOUGHT that once we got my pain settled with the 3x Oxycontin + as needed OxyCodone, I would be good to go.  And that worked for a few weeks.

But apparently because the tumor in my spine had metastasized again into my hips and tailbone, and it brings a whole NEW tenderness and sensitivity.  I wouldn’t have chalked it down as actual “pain” until today, when the sensation definitely grew into a pain situation.

My morning adventure was getting X-rays at St. Joseph’s hospital, then seeing my neurologist to discuss the X-rays, and then a drive over to St. John’s Cancer Center for a refill of my chemo pump medications and home for resting.

Unfortunately, St. Joseph’s is one of those old-type hospitals in a downtown area that is actually a series of buildings that have been cobbled together into one unit.  This means that there are very few DIRECT ways to get from one department to the next, so my walk from the entrance to Radiology, and then another walk to the Neurology dept were BOTH extremely long (involving several elevator rides and lots of walking)

And this caused me extreme pain.  It wasn’t the walk as much as it was the big brace I had to wear, which pushes down on my hips in a MOST uncomfortable way, and causes me to sweat like a Swede in a sauna.

Seriously, you could have WRUNG OUT the T-shirt I was wearing under the brace,
and heat causes my skin to bleed (I’m a redheaded weirdo)
and THAT causes a great deal of pain.

It was so bad that I got a special dispensation to only wear the brace for comfort reasons. I’ve been pretty good about wearing it whenever I travel in a car, or when I’m walking around outside, but with the advent of the hip pain I must admit I’ve been leaving it off as much as I’ve been wearing it.

I feel very fortunate that my neurologist is taking the fact that the brace is CAUSING me pain seriously.

But it’s been hard to climb out of the hole of pain in my hips that I slunk into this morning.  I know that after I’m able to get a decent night’s sleep the pain will begin to resolve itself, but right now it’s a cold, hollow pain that fills both hips, it’s probably time for a lidocaine patch, to be honest.

Pain is such a game changer.  It feels good to discuss it, but I also know how boring it must be to open my blog and read, “Pain, blah, blah, blah, PAIN!” But that’s my reality today.  Which is so weird after a few weeks of very decent pain control.

It also makes me wonder if the chemo pump drugs I’m on are having
some kind of effect on my pain meds, perhaps undercutting them in some way..?

Tomorrow I meet again with my Radiational Oncologist to discuss returning for MORE radiation treatments to deal with this pain, and to deal with the metastasis of the spine tumor.  This whole thing sounds so danged scary, but each and every nurse and doc and health professional I deal with has been NOTHING but hopeful that all of this is just part of my own, personal cancer journey.

I appreciate their hope, it gives me a lift, and makes my days a bit easier.  My nights, however, continue to be honeycombed with pools of pain and fear.

On a personal/work level, I am feeling terrible that I’ve not been able to swim above this pain to get more done on the website.  It’s like I can’t 100% focus on anything but — well — pain.  That’s what pain is, I guess, a big, fat element of life that steals all the focus from everything else.

And, by comparison, the pain I’m feeling is actually much LESS than the pain I was feeling for most of the Spring/Early Summer.  It’s just that now that it’s attached to the word “Cancer” it’s as if the pain has a deeper color, a scarier hue, and it can be alarming.

D Day

I’ll Be Taking The Walking Path For The Time Being!

The diagnosis of my cancer was PDQ (pretty damn quick), coming immediately after they’d finished my MRI on July 23rd.  At the time I was a bit nonplussed when the ER doc, after one test, made a pretty conclusive initial diagnosis; “Well, you DON’T have Fibromyalgia, you’ve got CANCER.”

After a bit of discussion I understood what me meant was that there were THREE pretty sizable sites of metastasis (spine, back of the neck and lymph nodes) which was as much of a guarantee that I had cancer as anything else they could have seen.  The mystery at that point was, what exactly was the PRIMARY cause of the cancer.

The days between the initial MRI, the lymph node biopsy and the point when the pathology was ready to be addressed were LONG ones.  Only 5 days, but it felt like 5 months, and it weighed very heavily on my psyche.  Those were 5 days of pure fear.

Dexamethasone: All the sweats, hot flashes, puffiness and irascibility of Menopause, now in a convenient PILL!

When my Medical Oncologist, Dr. N, sat us down and told us that I had Stage 4 Diffuse B-Cell Lymphoma, our reaction was SO positive I think it surprised him.  My big fear was that I’d had a large, solid mass tumor somewhere; colon, liver, some terrible place.  And THAT would have been a very difficult diagnosis to process.

But I was extremely lucky.  Lymphoma is a cancer where the word “cure” is actually used.  Yes, I am VERY lucky!

TODAY is another D-Day, at least for me it is.  Today is the day we look at the results of all those tests I’ve been taking this past week, most especially the bone marrow biopsy and lumbar puncture, to see if the cancer has moved into my spinal cord.  I think it’s about as scary as it sounds.

I asked demanded that I have my two more painful tests under anesthesia, and more than ever I’m convinced it was a very good call.  The residual pain I feel in my back and hips from these tests is pretty extreme this week, I would hazard to say that the pain these last few days has been as bad as it was at the start of this adventure in mid-July, which is pretty bad.  The main difference is that this time I have several pain meds I can use to break through this pain, and that’s a mercy.

Dealer’s Choice
So today I have my “long visit” with Dr. N,  where we’ll go over the test results and discuss what may be the next step in this trip.  With absolutely no medical experience or education of any type, my only point of reference is having been Gerry’s caregiver for so many years.

Topical pain relief from Galina!

But the truth is, Gerry is the ‘researcher’ in the family; he goes into his head, he reads stuff, he deals with numbers and percentages, THAT’s his comfort zone.

I’m not dividing my observations into a male/female way of dealing with pain and new medical information, because I know many women who are very numbers oriented (me, for one!) and I know MANY men who approach things in a more “feeling” way.

But in the case of Gerry and myself, I tend to be the “emotions whisperer” with the kids, Gerry tends to put the numbers into some type of structure that we can use to understand them better.

For this reason, when Gerry gets scared, or shows his emotions, it hits me very hard.  I’ve been scared this week, no specific reason, just overall FEAR.  Gerry admitted to me last night that HE is hella scared, too.  His fear paralyzes me, but I never want him NOT to tell me he’s afraid; he keeps SO much stuff bottled up inside as it is, I’m HAPPY that he shares his fears with me, too!

Emotional pain relief from Galina!

Good teams, like our family, will always find a way to regroup and work together, changing roles as each of us changes our outlook or understanding of the disease.  I am DEFINITELY feeling the need for some therapy, though. HealthEast Cancer Care at St. John’s only seems to have ONE Oncology Psychotherapist, and we have an appt for next week.  Apparently she’s exceptional, well loved, and — it being August — has been on vacation.

Note to self: NEVER get cancer in August again if you want to see your care team together in the same week…

I’ve been mentally preparing for The Worst News Scenario, and alternatively preparing for The Best News Scenario.  It’s really all one can do at this point.  Having spent a life in the theater, mostly working backstage, I love the feeling of an audience receiving all the parts of a theatrical production in the “order” that the director, designers and actors choose to present it.  Seeing exposition (back story) presented cleverly and well is a hallmark of exceptional theater.

Rx Pain Relief from the Docs

In terms of my cancer, ALL of the exposition rests in the hands of Doc N, who will reveal precisely what HE understands is happening inside of me later this morning.  In 4-1/2 hours, to be precise.  Which Gerry will want to be.

News when I have it!  Love always!